Wednesday, April 29, 2009
Mommy with Daniel (L) and Ben (R)
Daniel - 5 days old
Daddy with Ben (on vent) - 3 days old
Another preemie mom posted her NICU numbers on a forum I'm on and I thought it was a great idea. So here's mine (thanks to a journal I kept during that time):
30 weeks gestation
2 short minutes between the birth of Daniel and birth of Benjamin
2 tiny babies arriving way too early
1 amazing husband who gripped my hand just as tightly as I gripped his during those awful minutes before they were taken from me
1 best friend who just happened to be in town for that one night only and was able to be there for the birth of my boys
2 cc’s of breast milk for Daniel for the first few days of life
2 chest tubes for Ben due to 2 Pneumothorax
4 days of not holding Ben while he was on a ventilator
45 minutes of Kangaroo time with Ben when he was 8 days old
13 days old when Daniel wears real clothes for the first time
6 pumping sessions per day
1 positive CF screening test for Ben
4 blood transfusions
1 NEC scare (Ben)
1 terrifying infection (Ben)
1 brady so bad that Daniel had to be resuscitated using the bag
1 day I couldn’t visit due to a cold
1 naïve mom who didn’t pay much attention to the words “possible developmental delays”
9 amazing people who traveled long distances to come and meet these tiny wonders
47 people who felt the need to tell me about their friend/cousin/neighbor/person on a bus who had a child in the NICU 18 years ago and they lived (hooray for them...pardon my sarcasm)
57 very long days spent in the NICU and not at home with Mommy and Daddy
2 little smiles that now greet me every morning
“Too many to count” amazing doctors, nurses and staff that made sure my boys were able to come home to us
Tuesday, April 28, 2009
Although I haven't done it yet, there will come a time when someone close to me will piss me off and I'll need somewhere to vent. And if they know about this blog, I won't be able to do it here.
Plus, I tend to be somewhat private about the negative thoughts I have. Those closest to me likely don't realize how many dark moments I have, especially surrounding Ben's CP. But maybe it would be beneficial if they did? However, if I knew that those closest to me IRL were reading this blog, I likely wouldn't discuss those feelings here. I feel like I'm going in circles here.
So, do those closest to you read your blog? Do you find that that makes you "edit" your feelings, thoughts, emotions when you write?
Monday, April 27, 2009
Saturday, April 25, 2009
Friday, April 24, 2009
Thursday, April 23, 2009
Ben's case is on the milder side of the spectrum. There is a classification system that classifies children affected by CP based on their gross motor skills (sitting, walking, and wheeled-mobility). You can see it here. Currently, both of Ben's PTs consider Ben to be a Level 2. This would indicate that Ben will someday be able to walk indoors unaided and walk outdoors with the use of a walker. This however is some time away but hopefully before he starts school.
Some more specifics about Ben:
1. We're not sure if the CP has affected his speech. He is somewhat delayed but not enough to cause any real concern at this point. He babbles constantly and can say some words (about 4) in the right context.
2. We don't think that the CP has affected his cognitive abilities. I am not sure but have heard that this will be assessed when he's around 3 years of age. Currently, his PT's think he's very bright.
3. His fine motor skills are really great at this stage. He saw an OT once a week for about 6 months. We only see her once a month now.
4. The spasticity in his legs seems to mostly affect his hamstrings and calves. His adductors are not as affected (the muscles on the inside of the thighs). Usually with Spastic Diplegia the adductors are affected which causes scissoring of the legs when walking or crawling. Ben had a bit of tightness in his adductors during a recent growth spurt but lately that tightness has lessened.
When Ben was diagnosed in September (7 months ago), he could roll from his tummy to back and back to tummy. He could roll both left and right. He was not comfortable hanging out on his tummy. He could not crawl in any form. He could not sit unassisted. He could not pull up. Just 7 months later, Ben can sit unassisted (although he still has some balance problems so we don't leave him unattended when sitting). He can army-crawl. He can get up on all fours. He can pull to a kneel. He can hang out on his knees. He loves to be on his tummy. He can use a walker with help. He can go up and down the 2 steps into our family room. HE IS AWESOME! What progress he has made! He is a very hard worker and gets such pleasure out of doing things himself! He amazes me every single day.
Wednesday, April 22, 2009
In related news, Ben has also decided that he now likes apples, cheese and raisins. Last week, he wouldn't touch any of these items with a 10-foot pole, but now he can't get enough of them.
Life is good.
Tuesday, April 21, 2009
Monday, April 20, 2009
That said, Ben is starting to concern me. About 6 weeks ago, they were both actively repeating words and each had 3 or 4 words. Daniel now has about 6 and uses 3 all the time without any prompting. Ben however has pretty much stopped repeating and rarely uses any words. He does babble constantly though.
At first I didn't really notice that he was using his words as much. That's how it is with twins sometimes. Daniel was using them so I didn't realize that Ben wasn't.
So I took Ben into see the Speech Pathologist that he's seen in the past. I don't think she's overly concerned but does want to see him weekly. Ben has been making huge improvements in his gross motor skills lately so likely that explains some of his speech "regression".
But some good news...we went out for a walk this afternoon. And Ben said "car" about 5 times without prompting. Yippee! Daniel points out just about every car that drives by and finally Ben picked up on it. It's so great to have Daniel to motivate Ben....one of the perks of having twins.
Saturday, April 18, 2009
So back to the good news...I'M HOME ALONE! Hubby's at work (he's a tax accountant so needless to say very busy this time of year). And the boys are out with our nanny. I probably should tell you more about the nanny. Yes, I have a nanny and yes, I stay at home. She's amazing and is really a part of our family. She doesn't live in. She's here 5 days a week from about 9am til 5pm. It's great for us. It means I can take the boys to playgroups, swimming lessons, kindermusik, My-Gym (or whatever else I want) and have an extra set of hands. It means I can take Ben to his many appointments and leave Daniel at home with the nanny. It means I can go to the grocery store by myself. It means I can make supper most nights. It means I'm a better mom to my kids. And yes, it sometimes even means that I can take a nap or go for a pedicure.
So back to being home alone. Our nanny rarely works weekends (in fact I don't think she ever has). But her dog needed surgery and she was looking for some extra money. We've been super busy lately due mainly to tax season and our upcoming kitchen renovation. So I asked her is she wanted to work a few Saturdays. So she's taken them off to the Sugar Woods to see how good ole' Canadian Maple Syrup is made...hope she brings me some back...
I've been having some interesting thoughts today (maybe I have interesting thoughts other days but I usually can't hear myself think.) Like...
What on earth did we do to keep ourselves busy before we had kids? I've been alone now for just over 2 hours. I don't know what to do with myself. I've been trying to remember what hubby and I did on the weekends before the twins showed up. I know we slept alot more. But other than that, I really can't figure it out.
Sometimes being lazy pays off. The Boy Scouts were by this morning collecting bottles for their annual bottle drive. I gave them 6 moving boxes full of bottles. We've been meaning to take the bottles to the recycling centre for ages but hadn't gotten around to it. Oh, and not only are we lazy but we drink way too much Diet Pepsi.
There are some really great blogs out there. I've been surfing around and have come across the most amazing women. This one gave me some perspective and made me cry. This one made me laugh out loud. I also like this one and this one and this one.
And the one thought that just won't go away....I miss my kids. It's lonely at home without them. They make home fun and cute and loud and crazy.
Friday, April 17, 2009
Someone once asked me if I thought life was unfair. And no, I don't. We are truly the lucky ones who get to "have" Ben. He is a very special boy and we are blessed to have him in our family. I try to think that this is how Ben IS. I try not to think about how Ben SHOULD be. He is who he is and he is awesome for it.
Most of you have probably already read the "Welcome to Holland" poem. But I want to reference it here for those who haven't. It helps when those feelings of jealousy, envy, pity, etc. try to take over.
Wednesday, April 15, 2009
At his last PT session, Ben got to try "walking" on his own for the first time. He absolutely loved it and did amazing. His PT thought he did fantastic and I just had to catch it on video. It won't be long before he's ready for his first walker. Check it out!
I'm jealous of my neighbour who has 6 year old twin boys that she WALKS to school every morning.
I'm jealous of all the other twin moms in my local multiples group who gave birth to their twins much later than I did and consequently have "normal" twins who run and jump.
I'm jealous of people who don't know what CP is.
I'm jealous of the mommy I met last weekend who was taking her 2 year old out for a walk without a stroller.
I could go on and on.
I try to keep this jealousy thing in check mainly by convincing myself that we all have "our lot in life" and mine just happens to be that my son has CP.
I try to tell myself that it could be much, much worse. And most of the time that works...most of the time.
Tuesday, April 14, 2009
The appointment went well. He examined Ben, got him to play with some toys and asked us tons of questions about his development. He was quite pleased with his progress and told us that Ben's legs (hamstrings, calves, etc.) should not get any tighter now. He said that the tightness maxes out at about 18 months. I faintly remember hearing that before, but I had totally forgotten. To me, that was very good news.
He doesn't see any surgeries in Ben's near future. But he said we would revisit that topic in 6 months when he sees Ben again. He thought that eventually Ben may need heel-cord lengthening surgery and maybe even Dorsal Rhizotomy. But it was simply to early to tell.
So, all in all, it was a good appointment. No big news...which these days, I take as a good thing.
Sunday, April 12, 2009
My sweet, sweet boys are now almost 19 months old. Daniel and Benjamin were born on September 19th, 2007 at just 30 weeks and 2 days gestation. I had no complications with my pregnancy until 29 weeks when I started feeling some tightness and told my ob-gyn. Anyways, it turns out I was starting to dialate. A week later, I was dialated even more (even though I was not contracting). Both boys were breech and apparently they could feel Daniel's feet. They were very worried about cord compression and it was decided that an emergency c-section was in order.
So, within the hour, they had arrived. I was terrified. They were too young...just 30 weeks. They weighed 3 lbs 4 oz and 3 lbs 7 oz. They were of course taken right to the NICU after just a few pics with me.
They stayed in the NICU for 8 weeks and 1 day and came home together on November 15th, 2007. They both had rough hospital stays, but Ben definitely had the harder time. 24 hours after birth he was put on a ventilator. He was on it for 4 days. He spent the next 4 weeks going between CPAP and nasal canula. He got an infection. He required many blood transfusions. But finally, he got stronger and did better and got to come home.
Daniel fared better but still had a long haul. Although he never had anything really serious happen, he just took a long time to get over his A's & B's and take all his feeds on his own. Maybe he was just waiting for his brother to be ready to go home too.
When they came home healthy, I really thought we were in the clear. The only worry I had related to their "preemieness" was RSV. They only left the house to go to the pediatrician. We were living in NY then and didn't have any family or friends nearby. This turned out to be a blessing since no one came to visit and therefore didn't bring their germs with them. The boys didn't get sick the whole winter.
By March, I knew that Ben was developmentally delayed. But there was nothing I could do about it yet. We were moving home in May and I already knew that it took upwards of 6 weeks to get a PT to start seeing him.
Ben finally saw a PT in July. She came to the house and agreed that he was very delayed. At that point he was 9 months old (7 months corrected). Her assessment put him at about a 3 month level developmentally. Unfortunately she was going on holiday for 6 weeks and was only able to give us some tips on what to do. In August, Ben finally got in to see the PT at our local hospital on a weekly basis.
At this point, I still didn't have any idea that Ben had CP. Well, I should say my head had no idea. My gut knew something was up. All last summer, I was a wreck. I would say that I was depressed. I was overwhelmed. All I wanted to do was sleep.
The week after their 1st birthday, we went to a children's hospital a few hours away for the boys to have EEG's. Daniel had had a "shaky episode" and their pediatrician wanted both boys to have EEG's to rule out epilepsy. After their EEG's, we met with the neurologist. He told us that Daniel was fine and was likely having "shudder attacks". These are common in young children and usually go away within the first 2 years. Then he talked to us about Ben. He told us that Ben has spastic diplegia cerebral palsy. He told us that he didn't know if Ben would walk, run or play sports. He told us that Ben was obviously very intelligent and that the CP didn't affect his cognitive abilities. He told us that Ben was lucky to have a twin brother and that Daniel was lucky to have Ben. We just sat there. I don't think we asked even one question.
Then we drove home. We hardly talked on the way home. I'm pretty sure I cried. The whole drive home I was just itching to get on my laptop and start googling.
It's now 6 months since "diagnosis day". Ben is making great progress. He can sit up quite well, army-crawls everywhere, and can pull up to kneel (he's close to pulling up to stand). His fine motor skills are great and his OT now sees him just once a month. Just last week, he started training for his first walker. He did absolutely amazing and walked everywhere he could. His PT was thrilled with how well he did.
I am doing OK. Most days are good. Some days are hard. Some moments are really hard. Luckily, I have Daniel too so I have to face Ben's delays everyday and I can't be naive about how delayed he is. This makes it much easier to go to playdates and see other kids doing "normal" things. But sometimes, no matter how prepared I think I am, it catches me. I see Ben laying on the floor playing (because he can't get into sitting on his own) and all the other kids walking and running around him and it just gets to me.
But Ben is so much more than his diagnosis. He loves to be chased and tickled. He's a picky eater (he likes red pepper but not apples?). He has the most gorgeous eyes and the most wonderful smile in the whole world. He loves his daddy more than anything (even more than mommy). He loves Tupperware. He doesn't really like it when Daniel kisses him. But he loves to kiss Elmo. He is so determined and so hard working that it amazes me everyday.
And Daniel. He's small but a bully. He loves to take Ben's toys. But loves to kiss him too. He prefers mommy to daddy but would probably rather just have his blankie. His favourite word is "cracker". He loves to look out the window at the cars. He'll eat just about anything as long as you're eating it too. He has the bluest eyes.
So that's it. Those are my kids. I hope you enjoyed getting to know them.
I'm 34 (how did that happen?). I live in a small city in Canada about 20 minutes away from the very small town where I grew up (and where my parents still live). I am (mostly) happily married to my husband of 2 1/2 years. I have fraternal twin boys, aged 19 months.
Here are some random things about me:
1. My absolute favourite thing to do is sleep. I would nap every day if I could.
2. I admit it…I now drink instant coffee.
3. I make the best spaghetti sauce on the planet.
4. I have an amazing husband who gets up with the boys every morning at 6am and lets me sleep til 7:30…oh and even has my coffee ready for me when I get downstairs.
5. There is nothing that compares to a glass of good red wine.
6. I am on a diet. To date, I've lost 17 lbs. by doing Weight Watchers. I'd like to lose another 20 lbs. or so.
7. I can't watch CSI when home alone.
8. I have a ridiculous phobia of bugs.
9. I lived in Bermuda for 6 years, 3 of which were the best years of my life so far.
10. My French is good enough to survive in Paris.
11. Salt & Vinegar chips are my absolute favourite snack…always have been…always will be.
12. I love country music.
13. I hate exercise.
14. My last thought every single night is about Ben and his progress (or lack of), his therapies, his future, etc.
15. I spend way too much time on Facebook.
16. In my prior life (i.e. before kids), I was a Chartered Accountant (U.S. equivalent of a CPA).
17. I really don't have any hobbies.
18. I'm way too competitive.
19. I'm a horrible dancer and feel quite self-conscious about it. Red wine and/or vodka help.
20. I stole most of these from my Facebook Note "25 Random Things About Me".
Saturday, April 11, 2009
I am completely addicted to reading other people's blogs though. And I do feel that I have something to contribute. Reading blogs by other Mom's dealing with their kids disabilities has been such a lifesaver for me. Maybe I can help someone else. Maybe.
And, I am horrible at keeping track of all the wonderful and amazing things my kids are doing everyday. So this will hopefully help me do that.
So here I am. I'm blogging. Maybe I am doing this.